Primary Progressive Aphasia: A Rare Dementia Story

Actress Kimberly Williams-Paisley shares her family’s journey through her mother’s primary progressive aphasia and gives advice to younger generations who may be facing the future with uncertainty.Primary Progressive Aphasia: A Rare Dementia Story

Learn more about this rare form of dementia and get her thoughts and advice for future dementia caregivers.

What is Primary Progressive Aphasia?

Primary progressive aphasia is a very rare neurological syndrome that is a type of frontotemporal degeneration that develops gradually with symptoms that worsen over time. People with primary progressive aphasia may eventually lose all speech and may not be able to understand written or spoken language.

There are there three types of primary progressive aphasia and each type has a distinct set of symptoms. The three types are:

  • Semantic variant primary progressive aphasia
  • Logopenic variant primary progressive aphasia
  • Nonfluent-agrammatic variant primary progressive aphasia

Each type has a distinct set of symptoms that manifest themselves through speech, including trouble remembering the correct words, frequent pauses while thinking of the next word, slow speech, incomprehension and lack of understanding.

Like all forms of dementia, there is no real treatment or cure for primary progressive aphasia. 

The Importance of a Long-Term Care Plan for Dementia

Actress Kimberly Williams-Paisley, is best known for her role as the daughter in “Father of the Bride” or more recently in the hit series “Nashville.” She is married to country music star Brad Paisley, and is now speaking out about her mother’s fight with primary progressive aphasia. In a recent interview with Huffington Post, she spoke about her mother’s early symptoms, their care plan and things she wished she had done differently when it came to her mother’s long-term care.

Her mother has been fighting primary progressive aphasia for nearly 10 years, diagnosed at the age of 61. Early symptoms of the disease included misspelling words, difficulty signing her name, confusion and suffering accidents that would lead her to the emergency room. As the disease progressed, Paisley’s father was no longer able to care for her mother and the family found a long-term care community for her. 

Paisley said that she initially was in denial about the long-term nature of the illness and the diagnosis was surprising. She admits that she wishes they would have asked her mother her wishes for long-term care before the disease took over, stating:

“It would have been helpful to know what my mother wanted in terms of long-term care. What do you want to do when you are no longer able to care for yourself? This is the kind of question I wished we’d asked before it was too late. By the time we thought of it, her mind wasn’t there.”

She also confided that she has a care plan in place for herself and advocates that everyone should have one. “You can bet I have my letter [plan] already made out and I’m only 43. Everyone should have a plan and should be prepared to deal with a family member becoming ill. Some people don’t have long-term health care insurance. It’s different for every family. But everyone needs to have a plan so they’re prepared.”

Paisley’s upcoming book, “Where the Light Gets In,” is expected to be published next year where she will go into more detail about what life has been like since her mother’s diagnosis. Paisley is also partnering with the National Association of Insurance Commissioners to advocate for insurance, specifically long-term care insurance to protect families from the financial fallout of a surprising diagnosis. 

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